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Time to get more consistent with my blog again. Once I get off-track, it's hard to get started again.

Spent another 8 days in the hospital with pneumonia again this month. I have been home about 8 days, and have been fighting the cough again since just a few days after I got out. Last night I aspirated and have been coughing a LOT today, but it actually doesn't feel like it's getting worse just yet.

I am headed back to the Mayo the 17th of June. We're trying to organize a visit with ENT this time. I am going to see a local ENT on June 3rd, and we hope to be able to culture my sinuses. This last time I was sick, the CT sinus scan showed new holes in my sinuses which apparently are not helping my situation. The thought is that I'm harboring some odd bacterium in my system and, if we could just figure out what it is, we need to find the drug that will cure it.

Life post-transplant is certainly a daily adventure. I spend a lot of time in prayer to God talking to Him about trusting His timing, trusting His process, trusting His plans for me. Many times this is because I feel like I'm not catching on very fast, hahahaha! I'm sure God would be so pleased if he didn't have to teach me the same concept numerous times.

My children get out of school for the summer tomorrow, and I'm really looking forward to spending most of the summer with them. I should not have to be at the Mayo for very much of the time. I can't say I'm looking forward to the inevitable arguing and constant complaints about how "bored" they are. I am looking forward to "teaching" them the fine points of how to clean a house properly! Clarissa and Alec are both old enough to learn how to use the riding mowers and can start taking care of the lawn.

I have been thinking about spending one of my blog entries talking about GVHD, for the people who read this in hopes of finding answers about the process. I think I will do that tomorrow. My GVHD is mild, but I have it in my eyes, mouth, lungs, skin, muscles, gut, and probably liver. Right now the muscles and the skin are the most problematic. It's time to spend some time helping others with this part of the journey.

We have had a week of bad weather with tornado-producing storms. Tonight was no exception. I have been praying to God for His protection over our home and family, and tonight was no exception, either. I pray that your families are safe, too. In Jesus' name, AMEN.

I pulled up my blog, and was shocked to realize I haven't blogged in so long! I spent 3 weeks in Mayo last time (March), two weeks in the hospital. I had to return to the Mayo just two weeks later for followup. I have GVHD everywhere, including my lungs. So now I'm on this regimen of breathing treatments and steroids and more meds at night. My repeat pulmonary function tests came back really good! Dr. Shah says the improvement is excellent, but it doesn't mean I don't have lung GVHD (he says I do). At least I have a much better baseline than what presented last time. I have medicine for the mouth GVHD. The steroids are improving my muscle aches and pains. The dizzy spells are continuing, and we have no clear answer as to what's causing them. The good news is that I'm more convinced that they are caused by movement -- when I stand, bend over, reach for things, etc. The bad news is that they are lasting longer and getting more frequent. At my next visit at Mayo in six weeks we are going to do a neuro-vestibular exam and check for inner ear issues.

However, the long-discussed trip out to visit with my brother got finalized, and I am here in Virginia with family. It's been an amazing week. My brother George and his wife Michele organized a mini-family get-together. Tina and I flew from Rochester to Virginia, where my dad and his wife Patti, George and his wife Michele, of course, my brother Chris and his wife Linda, my nephew Bradford and his wife Rae and their three kids, my niece Cassie and her son Julian, my nephew Alex and his friends, my nephew Ryan and his girlfriend--and even an afternoon with one of my best friends Shary--filled my week at a beach house George rented. So every morning I got to wake up to the beach view. It was awesome.

The challenge I faced most often this week was the sensation of being a "sick person" among a group of "not sick" people. Most of the time I choose to focus on the things I am able to do, instead of the things I cannot do, in order to stay positive and in order to feel that I'm honoring my commitment to God that I would traverse this journey with faith and perseverance, with no murmuring or complaining. This week, I have had to remind myself frequently of that goal!

It's not so much that I was faced with all the things I cannot do (yet), but I hated it being so obvious. "No, I can't go walking on the beach in my bare feet" "No, I'm not allowed in the ocean yet" "No, I can't get into the hot tub yet" "I have to get plenty of rest, so I'm going to disappear and take a nap" "No I can't stay up too late" -- but it also was so apparent to me how little I can do to "help" the others when it's time to clean up the kitchen after dinner or help pick up kids' toys at the end of the day. The dizzy spells have gotten so frequent and are brought on so easily by movement that I'm not much help with chores. And, just to be clear, NONE of the family members here had a single expectation that I could help; it's entirely my own perception we're talking about.

The week just highlighted how far I have to go. I'm still focusing on everything I've accomplished so far; I'm still thanking God every day, several times a day, for still being here, still focused on life, praising God for everything He has done for me. Last week I had the joy of being able to attend George's church. His pastor is amazing, whom I called afterward "the real deal." I was thrilled to be able to give a brief testimony of this last year's journey. Tina and I fly out Monday, so we will be able to attend church Easter Sunday.

I'm fighting another sinus infection, which is presenting itself exactly like last time. The cough has gotten worse again, the sinuses are clogged, my left ear is stopped up. Dr. Shah has called in some more antibiotics for me, so we'll see if they can kick this. A really bad storm blew into the area, causing us, literally, to evacuate the beach house before the rain started. Apparently that beach floods first thing! So we packed up and cleared out in 90 minutes! I couldn't believe it--how fast things got packed up and loaded. Just to affirm how amazing God is: we got home, got the cars unloaded, and had just closed the garage door when the rain came pouring down. I love it. God takes care of everything. Right now we're under a tornado watch until about midnight. A tornado did touch down in a nearby city, so we had the weather on for a while.

It's been a fun week, and I'm sad to see it coming to an end. I always wish we all lived closer together, or that I had enough money to make more visits. George paid for this one, as he did the last, and I'm grateful he has been blessed enough he can do this. I regret not being able to pay for it myself, but I have to remind myself God has a plan for me. I have no "need" per se, for anything, but it would be nice to have a little extra in order to do things like go on vacations to see family more often. :) First we have to do things like get the property taxes paid, get a car, etc. :)

This past visit at Mayo was going to be my last monthly visit, in that it's time to get to go to every three months . . . Dr. Shah says "not yet," so I'm headed back in six weeks. And, just for readers who are post-transplant, cutting down to three-month visits usually takes place before now, I'm just a slow progressor, hahahaha. I had a bone marrow biopsy this last time, but haven't gotten results yet. The sample was sent to the lab picked by the clinical trial this time, so it's taking time to get them back. Next visit will be a regular checkup, plus the sleep study and neuro-vestibular exam. And maybe THEN I'll get to go to three-month visits!! I'm sure I will be just as excited next time as I was this time, but even if I don't graduate to every three months, I'll still be just as grateful to God for His work in my life. Tonight I hope you have something you thank God for every day. In Jesus' name, AMEN.

This post has been a while in coming. I have essentially been sick since my last post! But the longer I went without writing, the harder it has been to get started again. This evening I'm on my laptop and I've vowed not to do anything else until I write!

The cough which started in January and which was still there in February, was still with me coming into March, even after two rounds of antibiotics and one round of steroids. The long story short part of my post is that Scott and I drove up to Minnesota a few days early because I just rounded that corner from "puny" to "just plain sick," and I could tell a difference. The funny part of that story is that Scott took me to the ER back home because Urgent Care does not have a CT machine, but the ER's CT machine was broke that day! I look at it as God intervened because He knew I needed to be here at the Mayo instead of at home.

Even so, Dr. Shah had moved my appointments around so I could be seen first thing Monday morning. I did not make it that long, and ended up admitted at Mayo hospital on Sunday. Turns out I have pseudomonas pneumonia and a wicked sinus infection. "Wicked" as in the doctors said my sinuses were a lot scarier than the chest CT findings. All four sinuses are not only completely full, but blocked, and my tympanomastoid (translation, ear canal) cavities are full as well. Which, by the way, explains why I've been deaf in my left ear for so long. The right side is partially full. I learned an interesting fact from my ENT--without both ears working, a person can't tell direction of sound. So I could have my phone right next to me, hear it ring, and be unable to tell from which direction the sound is. As you can tell, you also learned two new things in just one paragraph.

The drawback (well, one of them) to having pneumonia is that we are unable to complete the full workup which was scheduled for this time. We have to clear the pneumonia before we know if the test results we're getting are accurate. For example, am I short of breath because I have pneumonia or because my heart has declined? The likelihood is that it's due to the pneumonia, but it's pointless to check the heart until my lungs are cleared. No matter what day I get done here, I still have to be back on April 8th for the clinical trial, and I will be here until the 22nd. BUT!! After I'm done in April, I don't have to come back until July, woo hoo! AND! If my platelets stay where they are or above, I'll be cleared to fly next time.

The other issue going on is that, apparently and also unbeknownst to me up until this part of my journey (and now you know as well), pseudomonas and lung graft-vs-host disease present very similarly on a CT scan. The findings are called tree-in-bud opacities. Remember the game of jacks from when we were little? That's what these little things look like, literally like someone left some jacks in my lower lungs. First we have to clear the pneumonia, then I'll get rescanned during my April visit. If the pneumonia is gone but the jacks remain, I'll have another workup for graft-vs-host of the lungs.

I'm getting to that part of the transplant process I clearly couldn't plan for. I have been sick with something since I got home in December. Sure, I have good days, and I'm blessed and grateful for every day I have, good or bad. It is just, I suppose, that it's beyond frustrating to be this limited. I can do most of the "normal" daily stuff, but all of those things are accomplished at the speed of sloth (I saw a funny meme the other day about somebody doing something at the speed of a sloth on Ambien, and I just laughed out loud). I wear out before I'm even close to being ready to wear out, and I'm bound by what my physical body can do. I didn't expect it to be this profound, and I didn't expect it to be so frustrating! Yikes. I praise God in all I do, and mostly I'm praying for patience. I knew ahead of time it takes a minimum of a year to recover from a bone marrow transplant, but I think I back-dated my expectations to "a year from when I started this process," hahahaha. That's my story for now.

Part of what's going on right now is that I have no voice. Literally. At first I assumed that I must have just worn it out because of the non-stop coughing, but the doctors have said my vocal chords could be infected. They also said the cough and the hoarseness are usually the last symptoms to clear up! How is that possible? In my universe, um, obviously, the cough and hoarseness should go first. But, seriously, have you ever thought about this: you lose your voice and then, suddenly, you have a million reasons to need it? I can't talk on the phone, I can't order my own food at a restaurant, I can't sing out loud with my Christian music. When I couldn't stop itching last summer, I thought that was the worst symptom to have. Now, I can't stop coughing, and I'm thinking that's right up there on the do-not-call-me list. I know I'm being a little bit silly, because so many others going through transplant have gone through every do-not-call-me symptom there is. I'm very blessed that it's been so mild.

I've been putting off writing because I didn't want to murmur, grumble or complain (my commitment to God at the beginning of this journey), and I wanted to share information about the journey which might help others. As I write, I feel better! Yes, these are tough times and, yes, they have been challenging, but I continue to experience God and feel His love every step of the way.

One of the people I've asked for prayers before, Bryan, has been waiting on a heart for a very long time. He got so bad that he was put into ICU until he got his heart. I'm very, over-the-moon, excited and deliriously happy, to report he got that call this week. He received his new heart just in the nick of time, two days ago, and is doing well. Prayers are answered, all the time, all around us. This one is special to me because Bryan was in the transplant house most of the time while I was here. Scott and I took over as people here the longest when Bryan went home (his insurance opted to pay for air flight instead of covering the house). Now he's in the hospital with a brand new heart, AND he'll be coming back here and on the same floor as we are. I can't wait to see him. Now I can truly say that everyone I met while here, who were waiting on organs, have all received them. God is so good.

Every day I add to my testimony. Last April I stood in front of my church CR group and announced that, in a year, I would be back to give my testimony about how God saved me. It's almost that time, and I'm still here to give that testimony, which only gets stronger every day. I pray that, in YOUR lives, you find something every day to add to yours. In Jesus' name, AMEN.

I'm having a little trouble keeping up! Tina and I got home from Rochester Friday night, and I have essentially been a vegetable since. Well, a lot of the time. Saturday I didn't do anything except sleep late and take it easy. Sunday and Monday were both good days; I got lots of stuff cleaned and organized. Must have overdone it, though, because today I haven't felt good all day.

I finished my steroids yesterday, and have five more days of the antibiotic to take. Last night, my first night after I finished the steroids, I just coughed and coughed and coughed. (So I didn't sleep well.) All day it's cough, cough, cough. I don't like steroids, (1) because of their impact on my diabetes, and (2) because of the associated weight gain, so I really don't want to keep taking them. However, I'll finish the antibiotics and check in with Dr. Shah to see where he stands on the issue.

Yesterday's Bible study was very comforting to me, and it stayed with me all day today as well. I was reading in the Book of John, where Jesus was explaining about living in the light. Sometimes when I read the Word, life feels so simple--when I'm not reading the Word, life gets confusing pretty quickly.

Tonight I helped the two little kiddos finish their Valentine's boxes. Kyan did a Naruto theme, and Maggie did Minecraft. It was interesting watching them, because they both had very clear ideas of what they wanted. All I did was help cut the construction paper to fit and tape the overall product for protection. I already bought the Valentine's candy for their respective parties, but tomorrow we need to stuff all the bags. :) Kyan brought home a list of things his class needs for its party, and his idea was that I would buy EVERYTHING on the list. Hahahahaha. He's very worried that, if I don't, his class won't have enough. He's so sweet. Hopefully I reassured him that other parents will be contributing as well.

I was so looking forward to Celebrate Recovery tonight, but I was so puny I didn't even try. I thought if I took a power nap I could push through, but even the power nap didn't help much. I already told the kids Mommy was probably going to need lots of help in the morning to get them off to school. I'll sleep in a bit, then start my day. I have to go into Tulsa for lab work, to see where I am this week. I'm not particularly interested in my labs this week, believe it or not. Since they've started trending up, and I'm out of the danger zone, at least as far as platelets and neutrophils go, I'm good. Usually I can't wait to see the new numbers; this week I'm all, "whatever it is, it is." Dr. Shah told me not to get entrenched into the notion that I won't need to return until March 5th (my current new date), so that I'm not upset if he decides to pull me back in early to finish the workup (which of course depends on my labs). I'm kind of in a place of acceptance, knowing I can't actually control what my blood work is doing, so I may as well go on about the joy of living my life.

Tomorrow Jeanne's coming over to do Valentines with the kids. She and Rick are not getting kids over the weekend since they have to travel to Ft. Smith and take care of Rick's mom this weekend. They didn't get to come last weekend because of the weather, so she picked tomorrow to spend some time with them. I hope these children realize how blessed they are to have her in their lives. I know I do.

So, I'm closing for tonight. I am clearly recognizing what an effort journaling every day is. I haven't met my goal, but I'm tracking pretty well. Usually if I don't journal, it's because I don't feel well, so I may have to write sometimes earlier in the day. I hope God's peace and light surrounds you this evening. In Jesus' name, AMEN.

We didn't even try to head home today. Blizzard conditions in Iowa, solid ice in the Kansas City area, and lots of snow to admire here in Rochester. We're all packed and ready to load up in the morning, and are hoping for decent road conditions home.

My visits with Dr. Shah and the team went well yesterday. My CT scan showed a few things; however, nothing too alarming. Dr. Shah said we're going to start with the basics: an antibiotic for the sinus congestion and prednisone for the fluids. He's increasing my Lasix as well. The CT showed a mild inflammatory or infectious process in the bronchial tubes, and a few patchy areas of ground glass opacities (usually an infectious or inflammatory process). Dr. Shah will be checking it again at the beginning of March. Bottom line was no bronchoscopy necessary this time. I also need a pulmonary consult and a cardiac consult, but he gave me the choice to stay this time a few extra days, or plan ahead and do the full workup next time. Obviously I picked the next time!! For one thing, we can see if the meds work, which will make it easier to diagnose me.

In March I have to be here twice, because I have to come every 28 days on this clinical trial. However, my visit at the end of March is the last monthly visit! I do not have to come back until July after that. I'm pretty excited.

I was able to go outside for a bit today and take some pictures of the snow. It's so pretty when it first lands and before the dirt from the cars and snow plows gets mixed in. Right now it's 1 degree here with a wind chill of 21 degrees below zero. Scott says it's below freezing in Oklahoma today, so the kids are supposed to be turning on faucets tonight. I strongly encouraged the family to use the wood stove! It's a Buck stove and keeps the house toasty, plus it saves on the propane bill.

Tina went to the store tonight and got some pork chops for dinner. We made them with wild rice and steamed broccoli. She used the pan drippings to make some brown gravy, too. It was a great dinner, and it's the best I've eaten in a while. I nearly finished both pork chops!! I *did* start a round of steroids today, so it's possible they could have contributed to the increased appetite, but the food was so good. I've been really stopped up since before I came back from Mayo the last time, and I can't smell or taste anything. Tonight, though, I can smell and taste and enjoy! Yum yum yum. When I weighed in at my clinic visit, I had lost 13 more pounds since I first got to Mayo on January 2nd. I hope that trend continues until I reach my goal weight.

I did not take a nap this afternoon, partly because I wanted to be sure I would be able to sleep tonight. We want to get up fairly early and get on the road early so we can get through Kansas City early in the day. The poor road conditions should improve south of Kansas City.

I am asking for prayer requests for my friend, Bryan. He is a fellow transplant patient with a congenital heart defect waiting on a heart. His condition has recently gotten critical and is now in ICU until they find a heart. He has been waiting a very long time.

God continues to take good care of me, although I haven't spent as much time in His word lately as I need to. I love how patient He is with me. Tonight I pray everyone has had some of God's patience today. In Jesus' name, AMEN.

So, tonight I am journaling on CaringBridge. I have been under the weather since I came home from Mayo this last time. Can't stop coughing, am all stopped up in the sinuses, my ears feel like they are under water, and I am basically just tired. So I have had an interruption in my journaling, and have not been able to meet my every day commitment, but I am picking it back up from here and continuing on! Part of the block is procrastination. So, no more procrastinating!!

Sis Tina drove me back up to Mayo yesterday (Monday the 4th), although we actually arrived on Tuesday morning at 1:03 a.m. :) I came up a day earlier than planned so Dr. Shah could do a workup here for this cough which just doesn't want to vacate the premises! I had my CT scan earlier this afternoon, and Dr. Shah will have had plenty of time to check it out before he sees me tomorrow at 1:30. If the CT doesn't give him the answers he's seeking, he wants a bronchoscopy. But, today when they were doing the CT scan, the technicians had me do films with both breathing in and holding it, and then breathing out and holding it, which Scott says gives them to view the tissue both with and without air in my lungs. Without air gives them a better view of the tissue only; with air can sometimes put artifact in the film.

Also at this visit is my clinical trial check-in. I haven't posted it here on CB, but last week's labs indicate that the clinical trial is taking hold. So exciting. The red counts (hemoglobin, hematocrit, and red blood count) were all NORMAL for the first time since the transplant (they weren't normal before the transplant at all, of course, but they should have come back by now; hence the clinical trial). My white counts are still all whacked out, but the neutrophils are within 0.1 of normal, so that's awesome. Platelets are still about 100,000 short, but I gained 20,000 in just a week. Wouldn't it be just so amazing if the platelets went above 100,000 this week? Also notice that transplant patients get all excited about the most unusual things--like counts. :)

Obviously Scott is home with kids this trip, since Tina could bring me. He did good this morning; they all got to school on time and cooperated reasonably well with after-school stuff. Kyan was the only one out of sync, but he was just mad he had to pick up dog poop. Hahahaha.

The weather here in Rochester is beautiful (it snowed today), but COLD, brr!!! Last night as were were in Iowa heading north, the temperature dropped to zero. We stopped off to get something to eat, and I got a fresh drink. I dumped out the water in my mug (onto the pavement outside the car) and put my new drink into my mug. I looked outside and the ice cubes, which had been dumped with the remaining fluid, were already frozen into the water into the water I had poured out! On the inside of my window, where my breath had fogged the glass while I slept, the window was frozen! Crazy. After my CT scan, Tina and I went down the street for a late lunch. It was snowing when we left. An hour and a half later, as we're returning back to the GOL house, we were following the snow plow because they were already plowing the roads! It only snowed 2-3" as far as I know, but the 2-3" completely covered the roads and drifts were already forming. The wind chill here in Rochester earlier today was -8 degrees. Hopefully I'll get some cool pictures tomorrow.

Tomorrow will be a busy day at the clinic. I meet with the clinical trial coordinator, have lab work, see the pharmacist, see the nurse coordinator, see the doctor, find out if they have more answers yet, find out if I get the leave Thursday or if I need a bronchoscopy. So, tonight I will close and get some sleep. Need to make time for those evening prayers! For my fellow prayer warriors, one of my new transplant friends, Bryan, who is awaiting a new heart, is deteriorating rapidly and is being placed in ICU until they find a heart. He has been waiting a while, and it's getting close to being too late. So if you feel led, please add Brian to your prayers tonight. And to answer prayers, my friend Leslie is doing well!

Nothing is too big for God. I take great comfort in knowing that, and I hope maybe you can, too. Prayers for a restful sleep tonight and a good day tomorrow. In Jesus' name, AMEN.

Well, today I got the all-clear from my doctor to go back home tomorrow. AND I got my central line removed. So awesome! It took a very long time to get the central line out (like, an hour instead of five minutes) and lots of Lidocaine and lots of tugging. Apparently the "hood" portion of the line got seriously entangled with scar tissue. I told the provider I get attached to things. Just kidding, of course. But. The bottom line is that I'm free of the lines and get to take a bath soon. Important stuff.

We are totally packed up except a few minor essentials we need tonight and in the morning. We are going to wait until the morning to load because of the severe cold and our numerous electronics--not a good combination. Scott has actually committed to getting up early with me and loading the car before I go to clinic for my last three appointments so that, the moment I'm finished, he can pick me up and we can be on our way.

Ky was really funny tonight. I was talking to Rick about our tomorrow plans, and the kids got off the bus right as we were finishing up the phone call. Kyan asked to speak to me. He gets on the phone and says, in as nonchalant a tone as he could muster, "okay, I'll go." Then he hands the phone back to Rick. So I officially have a date for the Mother-Son event at school on Friday night.

Maggie has strep throat, so she has to stay home from school tomorrow. I am so blessed that my friend, Sarah, is able to go out to my house and stay with kids until my friend, Kim, goes over to my house (after she has worked all day) to stay at my house with them until we pull in. IF we cannot make it, then Mary is going to go over about 9. We hear the roads in Iowa are snowy, which could slow us down. However, if we get out of here as early as we think we can, we will NOT be going through Kansas City during rush hour! So, triple blessings from my dear friends and sis Mary and brother Paul.

As far as my regular doctor checkup, it went well today. We continue to be in a holding pattern. Basically just waiting for the next test result to see if we get any new clues. My coughing is due to a plain old cold, not pneumonia or some exotic virus. My counts were improved today. My eosinophils are still very high. My calcium is still low. My albumin is still low, but all three liver enzymes were ALL in normal limits, at the same time for the first time in who knows when. I have lost almost ten more pounds just while I've been here. (A fact I am blissfully happy about.) The result is that there are still things out of whack, but so far we don't have a single cause or answer...yet. I had another of the dizzy spells today, so we'll be keeping an eye on that. Dr. said something about a neuro/ vestibular exam if they continue. I asked all my questions, didn't get all the answers I had hoped for, but I did get the most important one of today: YES, you can go home. Hahahahahaha.

So here I am, three-plus weeks after I left home this time, ready to go home and spend two weeks visiting my house. Tee hee. When I come back in two weeks, and am here only a little bit, it'll be my last two-week turnaround time. Then I move to monthly visits until April, when I switch to every three months! It's so close, people! Soon my life will resemble a normalcy I can only dream of right now. I just found out another CR class is starting up in a few months (one I haven't taken yet), and I'm excited I might be able to do it.

I checked in on the news today, for what purpose I don't know, because nothing is really happening. it's all bad news, no news, sad news...I like to read the good stuff, too. I look for the God in stories. I see God a lot here in the transplant house. Lots of believers are here, and we all share our own God testimonies. Rochester itself is very welcoming to the various religions. For example, there is a Jewish synagogue across the street from the transplant house. There is a very large Muslim population which is well-integrated into the local society.

It occurred to me today that I have expressed trepidation about going home, in the sense that I get kind of anxious about "getting stuck here" longer than I had planned. Today, everything went really well and I'm going home. But last night I truly turned it over to God, fully accepted whatever His answer was going to be, and by the time I got to the doctor's office I wasn't even thinking about whether I was going home or not. I was focused on the answers we had and which ones we are still missing. It was later in the day that I realized I had quit thinking about it after I turned it over to God and reminded myself, for the millionth time, that God has it under control, and all things will happen in His perfect timing.

Next time I come, it will only be for a few days, and then hopefully I will be able to go see my brother George and his wife Michele and my nieces and nephews I haven't met yet. George and Chris (and their wives) were able to fly into Oklahoma a few weeks after my mom's heart attack but, since I was in Rochester, I didn't get to visit with them. My need to see my family has only gotten stronger. They have done so much for me in this past year, and they have blessed me so much--I just want to see everybody and give thanks in person. Plus, BONUS: my beloved friend, Shary, whom I have known for more than 35 years now, has moved to Virginia (where my brother, George, lives) and is only about an hour's drive away from where I'll be staying.

So, I'm going to end tonight with the happy face and blessed heart of a person who is heading home to beloved kiddos, loving family, and treasured friends tomorrow. I praise God with all my being. I hope you can see God working in your life, too. In Jesus' name, AMEN.

Today was a good day, as days go. I was able to sleep in a little bit before Mayo called with a chest x-ray order. I went over to the clinic and got that done, and several amazing things happened. One, I went downstairs and asked for the shuttle to be paged for me. The receptionist didn't have to page the shuttle, though, because it pulled up while I asking, to drop passengers off! So, I get on the shuttle and get over to the clinic. Two, I was early to the appointment because I was expecting it to take longer for the shuttle to arrive. I went ahead and signed in, figuring I could read while I waited. I literally NO SOONER sat myself down than the tech called my name. They took me back early because they were caught up!! Thus, I was able to get my x-ray early and got back downstairs. And, three, I sat down to wait for the shuttle and it pulled up--I had been dropped off thirty minutes before that and so I caught the very next shuttle! Woot woot! Gotta love the little things.

Dr. Shah's office called a couple of hours after my x-ray to let me know Dr. Shah had seen the x-ray and that it looked "reassuring" to him. He will decide tomorrow if he's going to order a CT scan, due to my "complicated" cardiopulmonary history. Last summer when I got pneumonia, the x-ray was negative but the CT showed the pneumonia, so he's not altogether overdoing it if he wants the CT scan. Besides, these new machines take only about 5 minutes to do a CT scan. In the older machines, the techs in the control booth had to manually take the photos sequentially, and it took about 45 minutes to an hour, remember? Well, now, the machine goes down and up, ALL the photos are taken in one pass, and then the computer compiles them. Technology is grand.

I was sitting here typing, and Scott says, "you're wheezing." I ask, in all seriousness (because I'm so focused), "oh, is that me making those noises?" Hahahahaha. It's not quite inhaler time--as in, it's too soon--but I'll be taking meds before bed.

Today different folks on the CR page were talking about group tonight, and I was all excited, thinking, "next week I get to go to CR!!" It's already been a month, I think, since I was able to go. Right now my counts are just barely over the threshold, so I'm putting extra effort into getting them up. If the current schedule holds, I'll be home late Thursday night. Plenty of time to recover for Tuesday.

Well, I need to put myself to bed. Have early labs in the morning, and then see the doctor's assistant, and then, hopefully, I get my central line removed!! I've been reading a lot of smaller Bible stuff today, as I didn't sit and read. I pray you're getting time with God! In Jesus' name, AMEN.

This morning I got my weekly labs drawn and then I went to the clinic to receive my monthly breathing treatment. I didn't get back until almost noon because of delays. All day I've been feeling this sense of registering that this is my life now . . . at least for a while longer. Going for labs, monitoring symptoms, taking care of myself, and waiting, waiting, waiting on something all the time. Waiting to get my labs drawn, waiting to get my lab results, waiting on the doctor to call, waiting for counts to come up so I can shave, waiting on the cough to clear up, and on and on and on and on. It's really exhausting processing it in terms of the next "couple of years" at a minimum. Lately, I've required frequent reminders to myself to keep taking it one day at a time, because that's really the only way I can do it.

I know I've realized a few times already that I often feel like this when it's close to going home time. I start anticipating the possibility I might "get stuck" here again. :) Isn't it crazy? I did get to arrive and leave exactly on time last time, but I still am feeling jittery. It's not all anticipation, though, I suppose that's the issue. I have been coughing and the cough has gotten more annoying. They haven't figured out why my protein levels are low, or why the calcium keeps dropping (it does come up into normal range, and then drops back down again), or what the source of inflammation is, or why my face keeps swelling. My 24-hour urine results came back, and I am dropping protein in the urine, but we don't know why. I just don't want to go see the doctor this week right before I go home and then have him say, "well, I need you to stay a few more days...." This is the point where I remind myself God's timing is perfect.

Scott took the Walmart shuttle to Walmart today and bought a super-charged battery charger. The part about "electric cord not included" was not on the outside of the box, only on the inside on the instructions!!! So now we have a charger but no way to charge it!! That should be illegal. I should "write a strongly worded letter to management" (source: Jack from Titanic) -- one of Scott's favorite lines. He uses it anytime he thinks we should complain about something.

Well, my procedure to remove my central line is still on the calendar for Wednesday. I'm not counting my chickens before they are hatched, but inside I am secretly very excited for that to happen! I'm envisioning my very first bath after the stitches come out! I can't wait.

This Friday is the Mother-Son event at the Upper Elementary. I'm still waiting to hear from Kyan if he wants me to go with him. He says, "hmm, I'll let you know." Hahahaha. Playing hard to get at this age? Oh man, we are so in trouble for his teenage years. Of course, we've already started the "how to treat girls properly" training . . . just recently we had to explain why it's completely inappropriate to slap a girl's bottom.

I really want to get outside tomorrow and shoot a few pictures of the snow. It's so pretty, but it's also super cold! Right now it's like -10 and it only got up to 10 today. The problem with the cold weather is it irritates my lungs and makes my coughing worse. So, I put it off, and then the next day, it's still cold, so I don't go outside. Hahahahaha. Now I'm hearing it's going to be 20 below by the time we head home on Thursday.

I haven't even read the news today. Maybe I didn't read it yesterday, either. When the news is the same day after day, as in no progress, it's not interesting to read the news. Tomorrow I have no appointments at the clinic (at least, not scheduled at this time--at the Mayo, things get scheduled at the drop of a hat), so I'm hoping to start getting ready to go. I will not be able to lift anything Wednesday after my procedure, so I'm going to have to get things as organized for Scott as I can before Wednesday. He'll have to load the car because I won't be able to. DARN I say (my voice dripping with sarcasm), I have to lay around and take it easy.

If anybody is in the mood to pray for random people tonight, I am praying for at least some answers before I go home. It's very difficult to live in limbo! And I'm ready to go home and hug and kiss those beautiful children of mine!! I pray everyone had a good day today. In Jesus' name, AMEN.

What a peaceful day. I slept a really long time. Being in the hospital isn't really a place one can seriously rest a long time in sequence. This clinical trial I am doing has several tasks that have to be done at specific times--vitals taken at certain intervals, labs drawn at exactly 2 hours post this, or at this time plus or minus two hours--so between vitals and labs and wellness checks, I came back to the transplant house very tired. Woke up late, had a healthy breakfast, and chilled out. We were going to go to a movie this afternoon, but the car had a dead battery. I'm assuming it's a battery not intended to start a car in 5 degree weather.

This evening I made breaded chicken breasts, potatoes and gravy, and green beans. It was good. We have only eaten out 3 times in all the time we've been here, which saves money. Before, I was still not strong enough to cook every day, so we ate out more. Another thing to celebrate, right?! Yes, right!

I'm beyond excited to report that my right leg hurts significantly less than the left one did, and I'm recovering much more quickly. Both the hip and thigh are pretty sore, but it's more in line with a sore muscle than one that feels like it's tearing every time I bear weight on it.

Dr. Shah has me tentatively scheduled to get my central line out on Wednesday before I come home. Of course, there's the caveat: "if" my counts continue to trend up. Specifically, if the platelets continue to trend up. The white count is not horrible, and the red counts are almost back to normal, but these silly platelets just can't hop on board. They were going up, but then they fell back down from 54k to 40k again. Sheesh. This is putting me at almost six months post-transplant never getting out of pancytopenia (where every single count is too low). With the second injection of shots in the clinical trial, I am finished with treatment. Now we just wait 4-6 weeks to see if it worked. I'm excited! The follow-up is so long (11 more months) that I was expecting to find out if it worked during the next 11 months. But, nope, the rest is just following up on such things as if it works, then if it stays, if there are any side effects that pop up (so far, so good on that front), etc.

I had this weird reaction the other day, and we had decided what must have happened was that I touched my injection site while the Lidocaine was still on the surface of my leg, and then touched my eye. I was talking to the nurse, and all of a sudden I got extremely dizzy and started seeing two or more of everything if I looked to the right. It was very disorienting but only lasted a few minutes. The topical Lidocaine wouldn't do that just because it was on my skin, and I had received no medication or anything, so that's the only thing we could figure must have happened. Well, fast forward to tonight, and it happened again! Scott said I was hyperventilating, so maybe that's what it was, but I wasn't hyperventilating the other day. Again, it only lasted a few minutes, but it sure was disorienting. If I closed one of my eyes, it would stop. But if both eyes were open, it would happen, and it got worse if I looked to the right. So, if anybody reading has ever heard of this, let me know! Right now it's a mystery.

I have mentioned before that we are in Mary's car while we're here. Well, Scott got rear-ended a couple of nights ago by a youngster who admitted she got "distracted" while reaching for something. He was stationary in the left lane, blinker on, waiting on his chance to make the left turn. She looked up in time that she didn't hit him on full speed, but it completely ripped Mary's bumper off and tore a part of the underlying car (where the bolts, that the bumper was attached, ripped out). Crazy! Scott was not hurt. Amazingly, Mary's car seems to have only minor damage, but the youngster's car's whole front end was smashed. The officer said he was putting the cause of the crash as "inattentive driving," but didn't cite the driver with a ticket. Scott thinks the office felt sorry for her, because she was so upset. Scott also said the officer was very respectful and kind. Plus, Scott appreciated how thorough the officer was. So kudos to the Rochester Police Department!

Aaron called today, and he seemed to be in good spirits. He said it's been a challenging week, but he also said it's basically typical prison life. He spends a great deal of time in church-related activities. He reads his Bible, he goes to church every time they have a service (different pastors come in and do services), he goes to Celebrate Recovery, and he attends AA. And he reads a lot of self-help stuff, mostly faith-based. I'm so grateful to God for waiting on Aaron to find his way back.

Who I need to touch base with is Bethany! Haven't talked to her in a bit. I will let you know how she is doing. Kristy reached out, and I called her back, but didn't catch her, so I will have to try again.

I guess that's today's update. Not a lot going on, but every day has something wonderful. Last night it snowed and Rochester was gorgeous this morning--even though it was only about 5 degrees when we got up. It's definitely a stay inside day tomorrow! One, it will still be cold, and two, we can't go get a battery charger until Monday. We have AAA but have already used up our service calls!

So, hope tonight finds everyone aware of their blessings. I truly believe they are always there, but sometimes other intrusions and life events can be so overwhelming we can overlook the good that does exist. Today I was reading about the Catholic boys, wearing Trump hats no less, who were taunting the Native Americans at the March for Life in Washington. Then I watched the video. It was terribly sad. That youth, at that age, could have developed such insidious disregard for human life and all its differences, is appalling, and dreadfully devastating. I also looked at the overwhelming response--of those who were also appalled and speaking out--and I see the positive. There are still people who care, A LOT, about how others are treated, AND they are willing to speak up on others' behalf.

God gave us a direct way to find hope. Through HIM. Pray in the name of Jesus, and you will find your hope. He will never abandon us. Enjoy your evening. In Jesus' name, AMEN.

I am beginning my blog with the recognition that I am about to trade a zero percent chance of living for a 15-20% chance. Added to that is my knowledge that 15-20% might just mean for a few years. Because my faith in God is strong, I suppose I believe I only need a one percent chance to go for it.

I had never heard of myelodysplastic syndrome, a form of cancer, before I was diagnosed with it in March of 2018. It's a bone marrow cancer. And my particular form of MDS is related to the treatment I received for Hodgkin's Disease in the 1990s, when I was given a regimen of MOPP/ABVD chemotherapy and then radiation, to cure the cancer. Now I am preparing for a bone marrow transplant at the Mayo Clinic in Rochester, MN. A transplant is the only cure for my disease, so there is no question in my mind this is what I'm going to do. I keep telling myself that God wouldn't have given me four beautiful grandbabies to raise if He didn't intend for me to raise them. I believe God is going to perform miracles in my life. I believe my journey and my healing are going to glorify God in every way, and I'm excited to see how He works things out. Right now I am telling myself that I am awake at 5:00 in the morning not because I am anxious but because there is so much I have to do in the next week to get ready to leave that I just can't sleep. Realistically, I'm sure it's a combination of both. Scott and I leave in eight days. I've been waiting on this trip to come, essentially since my diagnosis in March, but now that I have an actual date I must leave, it feels like there is not enough time to get ready. I've been keeping a list for a while. Don't forget this or that. Be sure to do this or that. I have this overwhelming need to get things "in order." How does one prepare to be away from home, from her children, for months? I try not to get into the cycle of feeling trapped because there is truly no other choice, so what am I feeling?

I just want the kiddos to be okay while I'm gone. Not just my babies, but my adult children as well. I feel sad for them that I will be gone for a while. I vacillate between wanting to spend every second with them before I go and wanting to keep everything as normal as possible for them. Then again, our lives changed in March of this year. We have a new normal. We're all going to be okay. Different, but okay. And I'm at peace with that.

I'm a grateful believer in Christ who is traveling a journey of high-risk myelodysplastic syndrome (cancer) with complex karyotype and p53 mutations, with treatment to include a bone marrow transplant. I choose to travel with God, trusting Him and His plans for my life. I choose to face this illness with faith, perseverance, and joy; I choose not to murmur or complain. I choose life! Thank you for visiting.

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